The Cough: Emerging into the light

This took place between 1997 and 1999. No need to worry about my current health. Last in the series... bet you're glad to read that!

After getting discharged from the hospital for the last time, I began taking a more aggressive stance regarding my condition. I was fed up with being told things that didn't seem true and often made no sense considering what I knew about myself. I had never had any allergies as a child or adult. I was 50 years old when this started and allergies do not pop up in the short period of a month. Neither does Asthma ( a favorite diagnosis by a few docs). It felt and acted like an infection from the beginning but was not treated that way at the beginning and later was treated as a secondary infection as a result of an ongoing condition.

It was called "asthma", "chronic bronchitis", and that great catch all... "COPD." You know what COPD is? It stands for Chronic Obstructive Pulmonary Disease but really means "We have no idea what is really wrong with you." Doctors, I learned through this ordeal, are as stumped as anyone when it comes to something that fits too many possibilities or doesn't fall into the neat diagnoses found in their medical books. It's a rare doctor who will admit he is stumped and seeks help. Their is a certain level of ego that is part of the makeup of those who enter the medical profession. And the ego is a master at control. Believe me, I struggle with mine all the time.

I found that doctors are less interested in curing you than they are in maintaining you at a level that keeps you dependent on them. I don't think that is their intent. I think it is just how they learn to function. It just seems to be the best they can do in some cases. In Palm Beach County (and, I suspect, a lot of other places) I found people on medications for life that should have been temporary treatments. A co-worker who also had a lung problem similar to mine was on prednisone for 12 years. As a result he had a huge number of bone problems due to a lack of calcium. The prednisone depletes calcium rather quickly.

In addition to that co-worker, there were two others who had chronic lung problems. I began to suspect something known as "sick building syndrome" and made complaints to the company and to the health department. The health department could not (or would not) do anything, they told me, unless someone died whose problems could be traced back to the building. I had no intention of being that person. The company made a few cursory tests in the building but decided I was a troublemaker or was perhaps angling for a lawsuit and found no problems. Even though they were well aware of the toxic mold in the stairwells.

In the end, I had "fired" one primary doctor, one pulmonary specialist, one ENT specialist, and two infectious disease specialists. I had been on the following medications:

Albuterol inhaler (2 puffs twice a day and as needed)
Flovent (two puffs twice a day)
Prednisone (5 mg per day)
Ciproflaxin (antibiotic, 750 mg 3 times a day)
Prevacid (30 mg once a day for acid reflux)

... for 18 months. Higher dosages for some at various times. And a few others for short periods which triggered adverse side effects I refused to put up with and which were not believed by the various doctors who prescribed them.

At the end of two years, I had quit the inhalers, dropped all antibiotics and prednisone and stopped the Prevacid in favor of over the counter ranitidine (generic version of Zantac) and that only once a day just before bedtime so I don't wake up with heartburn in the middle of the night. And I didn't die. Or get worse. Or have relapses. Slowly, I built up my lungs as best I could. I adjusted my diet to reduce my exposure to foods that aggravated my acid reflux problem.

I am now a doctor's worst nightmare, the Patient From Hell. My cholesterol went up to 204 and my good cholesterol was poor. A new primary doctor on my first visit to him offered to put me on Lipitor. I said "You can prescribe it if you wish but I won't take it."

"Would you rather have a massive heart attack?" was his reply.

"If I do, it would be my choice! You suggest treatments, I decide if I will take them. If you cannot handle that, you aren't going to be my doctor."

Instead of taking a statin, I got more exercise and altered my diet to reduce red meat and increase fish and poultry. My cholesterol dropped to 186 and the ratio of good to bad dropped to 1-3 (recommended by the AMA at the time). There are people who need these drugs and that should take them. I am just not one of them.

And that, my friends, is where I stand today. I am open to advice; I am willing to listen, to have treatments explained to me as clearly as possible. But I no longer just follow doctor's orders blindly. And I never will again. There are good doctors (most), great doctors (too few) and mediocre doctors (too many) and you have no way of knowing which is which until it might be too late. They are not gods, they are just human beings.

I still have minor problems with my lungs from time to time and I keep an up to date albuterol inhaler in my medicine cabinet just in case but haven't had a need for it since 2000. I truly think I would have been through this problem in a few months in 1997 if the doctors had simply believed me, had just listened to what I had to say.

And now I will never write about this again.

Addendum: Here's a story that is worse than mine...

Don't let a doctor destroy your baby's hearing

The Cough: Waging war

These events happened between 1997 and 1999. My health is currently pretty good.

After dumping my first pulmonologist and basically just ignoring my first ENT doc, I found new hope in my infectious diseases specialist. A lovely woman, first generation Cuban-American, who seemed genuinely concerned and competent. This wasn't to last throughout my relationship with her but she did me a great amount of good. I always pictured her as driving a black Porche Carrera and was disappointed to learn she drove a fairly low key BMW sedan. She is the one who introduced me to the PICC line and that is when I began the long road to recovery. I was to go through two, this covers the first.

She arranged to have the PICC line inserted by a couple of nurses at a nearby (to her office) hospital. A simple process quickly accomplished. I was introduced to the procedure of connecting/disconnecting the antibiotic container, clearing and cleaning of the connector using Heparin and care of the insertion point (preventing infection), and living with a tube hanging out of my left arm. It also meant showering with my left arm wrapped in plastic for the next several weeks.

The antibiotic was delivered in what looked like medium sized cold cream jars. These were to be kept refrigerated until about 15 minutes before use. Inside the jars, there was a balloon which filled it. Inside that balloon was the antibiotic. The balloon would "deflate" as the antibiotic was delivered through the line. The process took about 20 minutes or so from taking the jar from the fridge. If all went well. If there was no blockage in the line. Each week, a van came to our house and delivered a Styrofoam cooler filed with the next week's doses packed in those frozen gel packs and would pick up the empties. (We kept a number of those gel packs, very handy things, and at least one Styrofoam cooler.) The second PICC line, I was giving syringes (sans needles) which were much easier.

I had to do the treatment 3 times a day. Once every 8 hours. Even if I had to get up at 3 in the morning on my days off. I was working midnight to 8 AM at the time and I set a schedule of 11 (or so) AM, 7 (or so) PM, and 3 (or so) AM.

The first day after insertion of the PICC line, I ended up in the emergency room. The cough had me whipped that day. My lungs were clogged and I could not make it to the hospital on my own (Faye was at work) so I had to call 911. They arrived in a big rescue truck, ignored the PICC line and jabbed another IV into my right arm to provide me with the usual saline and off we went. 5 hours later, I was home again and breathing better.

The only other incident was a visit to the ER because the PICC line coupling blocked. Instead of clearing the blockage, the ER nurse tried to give me the dose through a vein in my hand. I had been on prednisone for several months and my veins were easily ruptured. The idiot did not listen when I told him not to use a tourniquet and the vein blew out. I told him to find someone else to deal with me. And he eventually did (after I "insisted"). It was only one of so many times in that two year period where I noticed that medical professionals do not listen to patients.

The line was supposed to be in for a period of 8 to 12 weeks. It stayed in for 16. It helped but did not cure. We found out during the second PICC line period that the pharmacy was giving me a generic form of Fortaz and it just wasn't good enough. She had not authorized use of a generic.

Removing the PICC line was done at her office by a nurse. It's a weird feeling as the line is slowly drawn out of your arm. Dr. Diaz chatted with me while it was being done. We talked about pseudomonas and she mentioned that it could be really nasty if it got into the lungs. My response? "Hello? Why do you think I am here?"

Like I said, they just don't listen.

When I ended up back in the hospital about 7 or 8 months later and needed another PICC line, things picked up speed. I "fired" my primary doctor when he again insisted I "must have allergies" and called me "Doctor Doug" in a rather condescending and dismissive tone. I chewed him out, told him to not bother to come into my room again and to simply sign off on anything Dr. Diaz ordered. I would switch to his partner as my primary after I got out of the hospital. I was still being badgered to have sinus surgery, which I still refused to do because no one could, or would, explain just what it was supposed to do in my situation. It was during that stay that I re-asserted my usual demanding self and took control of my problems and began to get better.

I have since decided that doctors are like auto mechanics. Great ones are very rare, and if you find a good one (who listens to you), hang onto him or her. And I hold the philosophy of this: a doctor who makes a mistake may only lose a bit of income, the patient may lose a lot more.

The Cough: hospitals suck

The first week in the hospital was actually split between two hospitals. It seems that my health plan didn't have a contract with the one (Palms West) I went to for the emergency care. I spent two days there before they told me about it and arranged transport to the nearest hospital within my plan.

It was an interesting two days. After the initial treatment of nebulizer (two treatments) and steroids (prednisone), I was placed in a semi-private room with a suspected cardio patient. He was just there for observation. It turned out that was a good thing; that he was there, I mean. I was supposed to get nebulizer treatments every 4 hours to keep my lungs open and as clear as possible. It was about 10 PM or so when I began to realize I was seeing spots before my eyes and was very light-headed. I hadn't had a nebulizer treatment since about 4 that afternoon. I buzzed for the nurse. I coughed, repeatedly. I waited... and waited. No one came.

My roommate rolled over in his sleep and pulled a couple of EKG monitors off which triggered an alarm at the nurse's station (one supposes) and a nurse appeared, walked past my bed and checked on him then re-attached the leads on his chest. She walked past me on the way out the door while I whisper-wheezed "I need some help" which she failed to hear. Noting my distress, my roommate buzzed the nurse who came back to him and he directed her to my bed where I convinced her of the need for a nebulizer treatment.

In the morning, I was introduced to a pulmonologist who would be trying to figure out what was wrong with me. I gave him the background, explained I was not allergic to anything, and told him I was in his hands. He gave me the possibilities (Good: possibly unknown allergies, to Bad: cancer) and told me he will need to run some tests. they wheeled me to a room with a large machine and explained the Lung Function Test to me.

I failed. Miserably. I could not even get started. As soon as I tried to breathe deeply, I began coughing violently. I was given a nebulizer treatment. I managed to get past the first step in the test but then began coughing violently again. Which put an end to further attempts to test my lung functions. So I was wheeled back to my room and left alone the rest of the day except for a couple of nebulizer treatments and meals and the taking of "vitals." Faye visited, my doctor called and apologized for not treating me more aggressively, but he didn't come by.

That night, sometime around 11 or so, I began coughing violently and then I felt a sharp pain in my back on the lower right hand side. It felt like I had been shot or someone jammed a cue stick into it really hard. I had just broken a rib. I soon learned no one really cared about that. Seems they no longer tape you up when you do that. Better to just leave it heal on its own, especially if your lung functions are already impaired. Or so I was told.

In the morning, they broke the news to me that I either had to sign a request to be treated there or be moved to another hospital. I chose to move. An uneventful trip in an ambulance brought me to Wellington Regional where I got a private room and a new pulmonologist. He also promised to inflict tests on me in an attempt to ascertain why I was having trouble.

I spent the next 5 days there, high as a kite on O2 and prednisone. Tests were attempted with about the same results as at Palms West. But, after 5 days, I was able to walk more than 50 feet without passing out and was promised that I would be right as rain with the proper treatment. This turned out to be overly optimistic.

I also learned that night nurses rarely follow the doctors' instructions unless the patient demands it (I did) and that some of them are terrible at inserting and removing IV devices. And that food at hospitals is not uniform. Wellington provided quite tasty meals once I got the doctor to take me off the cardio diet. You have to be firm, they think they are in charge.

I went home. I went back to work. I was feeling better. For a couple of weeks, anyway. Silly me, I still trusted doctors then.